The Worst of Times and the Best of Times

When I’m doing well, I have a hard time communicating with others in the Behcet’s community. Not because I am not empathetic to their struggles or want to help them navigate this journey any less, but because when I am doing well, I want to live my life with a semblance of how it used to be, before Behcet’s happened to me. It’s a selfish motive, and I am not a selfish person. I spend all day, every day giving back to my community and my family. But, in this one sense, I am selfish. 

To better help others understand why I am so protective of my “remission” time (in quotations because I never really know what Behcet’s is doing internally, I can only go by the outward symptoms), I would like to tell the story of the worst of times, the absolute lowest part of this journey to date. 

On Easter Sunday 2010, I was taken into a room for a routine procedure. The day before, I was lying in a bed in the ER with a police escort, because the man in the bed next to me had just killed two people. Both victims had been taken to the same hospital, and said hospital was concerned that the victim’s families may find out what room the murderer was in and seek revenge. And, since I was in the first bed in the room, I was given a police escort throughout the day. Of course, I knew none of this, only that my dad seemed even more worried than he usually was in the ER with me. He frequently left the room to speak to the officer, and I was too sick to be worried about the fact that there was an armed officer outside of my door who also went with me for my tests. 

That evening, I was mercifully admitted and transferred to a different unit after being told that I had yet another set of blood clots in the arteries in my right leg. I had surgery about six weeks prior for the same thing, and still had those incisions and an open fasciotomy to care for. The doctors decided that the best course of treatment would be to perform a minimally invasive procedure through my femoral artery and dissolve the clots with a scope. It would mean a small incision in my groin, but no major surgery. Since it was late on Saturday, they procedure was scheduled for the next morning. And, since it was fairly routine, my doctors were allowing another doctor to perform the procedure.

Easter morning, I was rolled down to the procedure room. Unlike other times, I was the only patient, so I passed my time cutting up with the technicians who were preparing me and the supplies. The doctor finally arrived, and I was allowed to remain awake so that I could talk to him throughout the procedure. I remember the initial incision and placement of the scope going as planned, but a few minutes later, I remember feeling intense pain and pressure in my foot and calf. I began crying and told him that something was wrong. My blood pressure skyrocketed, and I was given more drugs. I began screaming as the pain became too intense to bear, and the doctor sternly told me to be quiet. I told him over and over that I knew this pain, and that the clots were blocking bloodflow to my foot. He continued with his procedure, and I continued screaming. He asked the anesthesiologist to give me more medications to relax me, and the anesthesiologist said that he had maxed out all of the medications. I screamed for what seemed liked hours while the doctor worked, until my mom came running into the room. She was obviously not prepped for surgery, and the nurses attempted to remove her. She removed the sheet off of my foot, and then doctors then saw that it was white and without bloodflow. They immediately closed the incision and paged my doctor to come in. I was sent into pre-op, still screaming and begging the anesthesiologist to put me to sleep so that I could not feel the pain. There were papers to sign, and within half an hour, I saw the familiar faces of my surgery team waiting for me in an OR room.

I woke up hours later, and was told not to move. I had a catheter going into each femoral artery delivering medication, and moving would displace them and cause me to bleed out. I was in an ICU room, and I could only have one visitor at a time. That visitor had to scrub in and wear protective clothing, since my incisions were open. I was not allowed to eat or drink, since I could have to go back into surgery at any moment if the worst happened. A nurse allowed my mother to give me three spoonfuls of ice chips after I had been lying there for 24 hours. The pain in my legs was intense, since I still had inches of incision from my previous surgery and an open fascitomy that needed bandage changes regularly. The pain in my back and hips was intense, as I was lying in an awkward position at an awkward angle. I laid like this for almost 48 hours before being taken back into surgery to have the catheters removed. 

About a year after this happened, I went back and read emails that I sent and received from friends and family during this time. Only then did I realize the gravity of the situation that I had been in, both mentally and physically. Thankfully, I had a wonderful vascular surgery team who (again) ensured that I regained my health with no lasting damage.

Those two days that I spent lying on my back in an ICU unit were the worst days of my life. So, when I am given merciful breaks from the symptoms of Behcet’s, I choose to spend my time away from the Facebook support groups, blogs, and emails that revolve around the disease and reclaim some of my life. I am enormously thankful for days when I am feeling good and only have scars and medications to remind me of where I have been; I don’t know how I would handle living with Behcet’s if I was not given such merciful vacations from the reality of this disease.

So, as tomorrow is Behcet’s Awareness Day, I want to thank my support group for being there, and I want to honor those who will not be feeling up to celebrating much tomorrow. For those who are, let’s spend the day giving back to those who are not feeling well. Send an email, send flowers, plant a tree in someone’s honor. We all know how much those small gestures mean, and we never know when the tides may change and we are once again on the receiving end of well-wishes and prayers. 

Something I never really understood…

I’ve had Behcet’s for over 10 years, but have only been diagnosed for the past three years. I’ve always wanted to be as educated as I could regarding Behcets. Growing up, I was always a healthy kid, so the whole idea of being ill has been new to me. I received a crash course in how to let others take care of me in 2010, when surgeries, blood clots, and complications landed me in the hospital, and then living with my parents (who were wonderful) for almost a year while I recovered. I’ve learned how to manage medications and refills, time my injections every 12 hours, remember weekly or biweekly immunosuppressant injections, track symptoms, and work through pain. I’ve learned how to tell people that I’m not as healthy as most 24-year olds. I’ve learned how to ration my energy throughout the day and the week so that I can accomplish the things that need to be done in everyday life.

While learning how to manage the physical manifestations of my illness, I’ve also attempted to learn how to manage the psychological implications of life with a chronic illness, and life with chronic pain. I’ve read many, many books written by people who live with chronic illness, people who have died from an illness, family members of those who have had chronic illness, and doctors to patients with chronic illnesses. Many of these books have a chapter dedicated to something along the lines of “I have an invisible illness, so no one around me can see how sick I am.” I feel as though I have begun to really process and work through many of the psychological issues that go along with Behcet’s, however, I have never really felt as though I wanted those around me to see how physically ill I may be.

I have many, many surgical scars. I had a fasciotomy in 2010 that doctors were unable to close, so the outside of my right leg is largely scar tissue. I have one scar that runs from above my right knee to below my ankle. I have chosen to always wear long pants to cover up my scars. Even when the surgical wounds were new and still healing, I did not allow many people outside of those who were caring for them to see them. I don’t view my scars as “battle wounds” that I have won, I view them as a constant reminder of where I have been. I have been hospitalized for weeks at a time. I have been in ICU. I have been in wound care clinics. I have worn a WoundVac in public. That is not the part of my life that I want to remember. I see the scars when I shower, when I change clothes, and when I go to the bathroom, and they remind me of the journey that I have been on. I choose not to allow others to view my scars, because where I have been is not the most important part of my journey – the most important part of my journey is where I am going. (To be fair, part of my decision to not show my scars also centers around not subjecting myself to constant questions and looks from those who can see them, but that is a different blog.)

I guess what I am trying to communicate is: I don’t want other people to see what is going on inside my body, because I want to be known for so much more. I don’t want other people to see that I have an illness that gives me mouth ulcers, genital ulcers, skin lesions, blood clots, aneurysms, and avascular necrosis. I want this illness to be private, and I want to be able to control what other people know. Certainly, there are days when a particularly rude comment makes me wish another person could spend a day in my shoes, but overall, I am very glad that my illness is one that can be hidden until I choose to share it.